I am mom to 3 children who have died. Ben was lost to miscarriage in 1991. Kayda came to live with me in 1993 at the age of 4 1/2. She was a beautiful girl. She had Hydranencephaly which means she only had a brain stem. But, she was a happy interactive young lady with lots of strong opinions. She had a lot of medical needs and was frequently ill. Although she had many close calls through the years, she always pulled through. Then in early 2000, she started having 100s of seizures and sleeping most of the time. She was also having trouble digesting her formula. The 3rd week of March she had a feeding assessment where they concluded she was refluxing. The drs there tried to get me to agree to a partial do not resuscitate order. I refused. I agreed that there would be no more surgeries or tests under anesthetic but didn't think she was ready for a dnr. But, only 3 weeks later I realized that she was tired, and that it was time to let her go "home". Her pediatrician agreed with my decision. He said she likely had a couple of months left. She died just under 3 months later.

During those months her body gradually shut down. Tolerating feedings was the hardest. She got so she really only tolerated pedialyte. Her kidneys also stopped functioning. I took her to a hospice when she could no longer even tolerate pedialyte. They were so good with her and with me there. They knew exactly what Kayda needed. And, they were always there for me to talk to. My needs were almost more than Kayda's at that time. It was a very special 8 days where the world shrunk to just Kayda. By 8 days after going to the hospice, her heart was getting weaker and it was clear she was near the end. Although we'd thought she was dying in the afternoon she remained fairly peaceful. The nurse and I spent a lovely time talking about Heaven and reading scripture verses about death. When I put her to bed around 10 she was very warm. I took her temp out of curiosity and it was 44C (about 112 F). The nurse said it was due to dehydration. As I was getting her ready for bed I suddenly had an overwhelming urge to pick her up. She'd not been comfortable being held all day but I figured if was uncomfortable I'd just put her down. I held her in the position she loved so much (straddling my lap with her head on my shoulder) and talked to her about Heaven and who she would see there. I put on music I liked to listen to when I needed to be comforted rather than her favorite music as we'd always planned on if we knew she was about to die. After awhile I realized that her breathing was quieter. I held her for nearly half an hour and then felt twitching so put her down. I went to the other room to adjust the oxygen tanks as her legs were blue. As I approached her bed I realized she wasn't breathing. She likely died just a few minutes after I picked her up.

I was devastated with her loss. She was an only child and I was in a very bad and abusive marriage. I felt there was no reason for me to keep living. But then I remembered that I wanted to write a book on Hydranencephaly. That, and the support group that I'd started are what kept me going. Even though she only lived 11 1/2 years (7 with me) she has had a huge impact on the world. The support group has been in contact with over 400 children with hydranencephaly over the years. We have a neuro scientist who has written a well accepted paper in a prestigious journal stating that children with this condition are concious.

It is now 9 1/2 years since Kayda's death. I continue to miss her and birthday's and Christmas are still difficult even though I think they shouldn't be. And, just after what would have been Kayda's 20th birthday I was once again grieving the loss of a child. (Trevor's story will follow).

I know that I will always miss my children and long to be with them again. I've come to accept that their jobs on earth were finished, mine isn't.

I found this site awhile back and even posted some tips of some useful products.I never thought I would be posting on this page. However, we lost our 2 year old son to God's hands one week before his third birthday. Here is an article that was in our local newspaper.

www.brextinshope.blogspot.com

Here is the last article on our son that was written by Christena T. O'Brien - printed by our local newspaper, www.leadertelegram.com - on May 12, 2010

Joys, challenges of young boy's life remembered

Randi and Andy planned to celebrate their youngest son Brextin's third birthday Thursday.

Instead, the couple attended his funeral Tuesday.

"Brextin was a true angel," Randi said, "and I believe God gave him to us for a reason. He touched so many people, and I have been touched by so many people because of him."

Born on Mother's Day, May 13, 2007, Brextin died May 6 at Children's Hospital in St. Paul, where he had been taken for a second-opinion electroencephalogram, or EEG, which is a test that measures and records the electrical activity of the brain.

About two months after his birth, Brextin, also lovingly known as "Brexy Doodles," was diagnosed with West syndrome, or infantile spasms, a rare and serious form of epilepsy that usually affects babies younger than 1.
He also had microcephaly, a condition that is present at birth in which the baby's head and brain are smaller than normal for an infant of that age and gender, and he struggled with vomiting almost from birth.

The day before Brextin's death, "he looked great, and he was as happy as can be," Randi said. "I never thought that would be the last day he would be like that."

The number of Brextin's seizures began to increase, and by May 6 he was having about 12 a day, Randi wrote on her blog, Brextin's Hope. When he had a seizure, he would often vomit, and some of the contents of his stomach were inhaled into his lungs, and he developed pneumonia.

Randi had left the hospital at 3 p.m. May 6 to return home to take the couple's older son, Brayden, who will turn 6 in August, to kindergarten orientation. She got a call about 10 p.m., asking if she wanted Brextin put on a ventilator.

On her return trip to the hospital that night, she was told "he was getting his color back, and everything was looking good."

When she arrived, she found Andy in Brextin's hospital room, holding their son. Initially, she thought Brextin was sleeping - until she saw Andy's tears.

Devastated, Randi fell to the floor.

"I missed saying goodbye to my son," she said, breaking down. Brextin had died about 11:40 p.m.; she arrived around 12:15 a.m.

Two years ago, the Leader-Telegram featured a story about Brextin, detailing the struggles the little boy, then almost 1, and his family faced.

Since then, Brextin had made a number of strides, said Randi, who tried therapy after therapy with her son. He was able to sit, kneel on his hands and knees and stand if supported.

"We were told not to expect him to walk or talk," she said. "He would have walked. We firmly believe that."
That said, Randi has found solace knowing her son with the beautiful smile and special giggle no longer has to experience the vomiting, seizures or any sort of pain.

Randi who is a business education teacher has been touched by the caring of others, including her students, one of whom created the Facebook page Students Supporting Mrs. Stanley.

Hoping to give back, Randi is planning to put Brextin's therapy aids and toys into her family's garage one day and invite parents whose children might benefit from them to come by and help themselves. She plans to sell what isn't taken and use the money to establish a scholarship in Brextin's name for students with epilepsy who attend her High School.

"Brextin's life took a toll on our family at times, but it was a good toll," Randi said. "I want parents of (other) special needs children to not give up hope. Take one day at a time and believe in your child."